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Endometriosis: Should I Use Hormone Therapy?

You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.

5

6

Get the facts

Your options

This decision aid is for women who have mild symptoms and
have not yet had
laparoscopic surgery to diagnose or treat
endometriosis. Hysterectomy and oophorectomy may be an option for women who have severe symptoms and have already tried hormone therapy and
laparoscopic surgery.

Key points to remember

There is no cure for endometriosis. But hormone therapy can
help relieve pain. Hormones work for up to 90 out of 100 women. This means that
they don't work for 10 out of 100 women.footnote 1

Hormone therapy is a good first choice for treatment, unless
you want to get pregnant soon. Hormones may reduce the number and size of
growths (implants) and keep them from spreading.

When your menstrual periods stop at around age 50 (menopause) and
your estrogen levels drop, endometriosis growth and symptoms will probably also
stop. (In some cases, scar tissue remains after menopause and can cause
problems.)

Several hormones may be used. You would start with birth
control hormones (such as a patch, pills, or a ring). They are usually the best
choice for long-term use until menopause. If they don't help your symptoms, you
could move to a stronger hormone. And if that one didn't help, you might try an
even stronger hormone. The stronger hormones are often used only for a short
time, because they have serious side effects.

If your doctor says it's okay, you can take
nonsteroidal anti-inflammatory drugs (NSAIDs) with or without hormone therapy to
help your pain. Be safe with medicines. Read and follow all instructions on the label.

For some women,
hormones reduce pain for only a short time. For others, relief lasts a long
time.

The
endometrium is the tissue that lines the uterus.
During each menstrual cycle, a new lining grows, getting ready for a possible
pregnancy. If you don't become pregnant during that cycle, the lining sheds.
This is your
menstrual period.

Endometriosis (say
"en-doh-mee-tree-OH-sus") is the growth of this tissue outside of the uterus,
usually on the
ovaries or the
fallopian tubes. It also may grow on the outside
surface of the uterus, the bowels, or other organs in the belly.

These growths are called "implants." They grow, bleed, and break down
with each menstrual cycle, just like the lining of the uterus does. In some
women, this can cause pain and can make it hard to get pregnant.

Sometimes scar tissue forms around implants. This also can cause pain and
trouble getting pregnant.

The female hormone
estrogen, released by the ovaries, makes the implants
grow.

While some
women never have symptoms, others have severe pain. In some cases, the problem
can affect how well your bowels, bladder, or other organs work.

Pain from implants may be mild for a few days before your menstrual
period. It may get better during your period. But if an implant grows in a
sensitive area such as the rectum, it can cause constant pain or pain during
sex, exercise, or bowel movements.

Symptoms often get better
during pregnancy and after childbirth and usually go away after menopause.

You likely will
start treatment with birth control hormones. They are usually the safest
hormones for long-term use. If they don't help your symptoms, you could take a
stronger hormone. And if that one doesn't work, you could try an even stronger
hormone. The stronger hormones are used only for a short time, because they
have serious side effects.

Hormone therapy reduces estrogen levels
in your body. Because of this, you can't use hormone therapy if you want to get
pregnant.

Birth control hormones (such as a patch, pills, or a ring) stop
ovulation and the growth of implants. These
hormones can be used long-term until menopause.

Gonadotropin-releasing hormone agonist (GnRH-a) therapy lowers estrogen to the levels women have after
menopause. It's usually used for only 3 to 6 months. Women sometimes take it with
progestin to reduce side effects. GnRH-a is given as a shot or as a nasal spray.

Progestin lowers estrogen. It shrinks
implants and reduces pain. Progestins are given as a shot or a pill. The levonorgestrel-releasing intrauterine device (LNG-IUD) is also used.

Danazol lowers estrogen levels and
raises male hormone (androgen) levels. It shrinks implants
and reduces pain for most women. Because of its side effects, though, it is not chosen as often as the other hormones. And it's used for no more than 6 to 9 months.

Aromatase inhibitors help stop the body from making estrogen.
These medicines are used along with hormone treatment.

Hormones
relieve the symptoms of endometriosis for up to 90 out of 100 women. This means
that they don't work for 10 out of 100 women.footnote 1 You may have to try two or more
types of hormones before you find one that works for you.

If
taking birth control hormones works for you, you can use them for years (unless
you plan to get pregnant).

For some women, hormones work for a
while. For others, relief lasts a long time.

After treatment with
any hormone therapy, pain may come back.footnote 2

About 35 out of 100 women who use hormones for
mild endometriosis have pain 5 years later. This means
that 65 out of 100 women don't have pain 5 years later.

About 75
out of 100 women who use hormone therapy for severe
endometriosis have pain 5 years later. This means that 25 out of 100 women
don't have pain 5 years later.

These medicines have different side effects and risks. Some of them can
make you feel like you're going through menopause.

Birth control hormones. Side effects are usually mild and often go away after
the first few months. They can include spotting between periods, nausea,
headaches, breast tenderness, and mood changes. There is a small increase in
the risk of getting blood clots. Your doctor will not prescribe these hormones
if you have had blood clots before, have had breast cancer, or are older than
35 and smoke.

Progestin. Side effects may include mood changes and
depression, bloating and weight gain, weight loss, breast tenderness, and
absent or light and irregular periods. High-dose progestin can cause bone
thinning. Talk to your doctor
about whether the
progestin intrauterine device (Mirena) might give you
the same benefits with fewer side effects.

Danazol. Side effects include
decreased breast size, acne, and more facial and body hair. It can also cause
deepening of the voice, which can be permanent. It can increase the risk of
"bad" cholesterol.

Aromatase inhibitors. They can
cause headaches, nausea, diarrhea, aching joints, and hot flashes. You also
have a risk of bone thinning if you use these medicines for a long time.

You are
close to menopause. Hormones might ease your symptoms until menopause.

Compare your options

Compare

What is usually involved?

What are the benefits?

What are the risks and side effects?

Take hormones
Take hormones

You take hormones as long as your
doctor suggests. Depending on the hormone, you may take pills, use a patch, use
a vaginal ring, use a nasal spray, or give yourself shots.

You may have tests to check for side effects, such as high
cholesterol, depending on which hormones you take.

You may take
nonsteroidal anti-inflammatory medicines (NSAIDs),
such as ibuprofen or naproxen, for pain.

Your symptoms may get better or go
away.

You may be able to take hormones until menopause, when your
symptoms should go away.

Hormones might not
relieve your pain, or the pain could return after you stop taking the
medicine.

Hormones have side effects that can include menopause
symptoms, rapid bone loss, and an increase in cholesterol.

You could have side effects from
NSAIDs used for pain.

Don't take hormones
Don't take hormones

You may take
NSAIDs, such as ibuprofen or naproxen, for
pain.

You may have
laparoscopic surgery instead, especially if you can't
take hormones or you have fertility problems because of endometriosis.

You won't have side effects
from hormones.

You can start trying to get pregnant sooner.

Your symptoms
could continue or get worse.

If you have
laparoscopic surgery, you have the risk of infection,
bleeding, and damage to your bladder or bowels.

You could have side effects from
NSAIDs used for pain.

Personal stories about treating endometriosis with hormone therapy

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

The pain
before and during my periods was so bad, I couldn't exercise. I am an active
person, and the pain was really getting me down. I have had endometriosis for
years and have tried ibuprofen and other medicines I could get at the
drugstore, but they were not helping anymore. My doctor said taking birth
control pills might help me. She said that also taking ibuprofen around the
time of my period could really help. After a couple of months, I noticed enough
of an improvement that I could do everything I used to. I'm especially happy
that I can use this treatment for a long time, unlike other hormone therapies
like Lupron.

Maria, age
45

I first noticed that my periods were
becoming painful about a year ago. I wasn't too concerned, but I discussed the
pain with my doctor when I went for a Pap smear. My examination and Pap smear were
fine. My doctor said that endometriosis could be the cause of my pain. Since my
mom and an older sister have had endometriosis, I wasn't too surprised. My
doctor talked to me about my options. She told me that using ibuprofen, such as
Advil or Motrin, might help my pain. Now I start taking ibuprofen the day
before my period begins. It really helps relieve my pain. As long as ibuprofen
helps my pain, I will wait before I try other treatment for my endometriosis.

Kathleen, age
38

I was surprised when my doctor told me
endometriosis could be the cause of the pain I was having with my periods. I
had never heard of endometriosis before. He explained what it was and told me
about the treatments I could try. Taking birth control pills didn't help, and
my doctor said a medicine called Lupron might stop the pain, though I could
only take it for a few months. Treatment with Lupron worked. I hardly have any
pain now, and taking a little estrogen for add-back therapy controlled the hot
flashes without feeding the endometriosis.

Hannah, age 29

My periods
were really painful about 5 years ago. I went to my doctor, and he asked a lot
of questions about my periods and did a pelvic examination and some tests. When all
the tests came back normal, he said endometriosis might be the cause of my
pain. I asked if waiting a few months to decide about treatment would be
dangerous. He said waiting would be fine. After a few months, the pain eased
up. I am glad I decided to wait and see.

Nancy, age 40

What matters most to you?

Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.

Reasons to use hormone therapy

Reasons not to use hormone therapy

I want to control my pain better.

I get enough pain relief from anti-inflammatory medicines.

More important

Equally important

More important

I don't want to wait until menopause for my pain to go away.

I want to wait as long as I can before I start using hormones.

More important

Equally important

More important

I can handle the side effects of hormones for a few months.

I don't want to deal with the side effects of hormones even for a few months.

More important

Equally important

More important

I want to have a baby, but I'm willing to put off trying to get pregnant for 6 months or a year.

I want to get pregnant in the next year.

More important

Equally important

More important

My other important reasons:

My other important reasons:

More important

Equally important

More important

Where are you leaning now?

Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.

Using hormone therapy

NOT using hormone therapy

Leaning toward

Undecided

Leaning toward

What else do you need to make your decision?

Check the facts

1.1, Hormone therapy is a good first choice to treat endometriosis if I don't plan to get pregnant soon.

TrueYou're right. Hormone therapy is a good first choice for treatment, unless you want to get pregnant soon. Hormones may reduce the number and size of growths (implants) and keep them from spreading.

FalseSorry, that's not right. Hormone therapy is a good first choice for treatment, unless you want to get pregnant soon. Hormones may reduce the number and size of growths (implants) and keep them from spreading.

I'm not sureIt may help to go back and read "Key points to remember." Hormone therapy is a good first choice, unless you want to get pregnant soon. Hormones may reduce the number and size of implants and keep them from spreading.

2.2, Some hormones can cause side effects that will make me feel like I'm going through menopause.

TrueThat's right. Some hormones just cause mild side effects. But some strong hormones can give you symptoms like those of menopause, such as hot flashes and vaginal dryness.

FalseNo, that's not right. Some hormones just cause mild side effects. But some strong hormones can give you symptoms like those of menopause, such as hot flashes and vaginal dryness.

I'm not sureIt may help to go back and read "What are the risks of taking these medicines?" Some hormones just cause mild side effects. But some strong hormones can give you symptoms like those of menopause.

3.3, I can take hormone therapy as long as I want to without side effects.

TrueNo, that's wrong. Birth control pills have side effects but are safe for most women for long-term use until menopause. But other hormones should be used for only a few months or a couple of years because of side effects.

FalseYou're right. Birth control pills have side effects but are safe for most women for long-term use until menopause. But other hormones should be taken for only a few months or a couple of years because of their side effects.

I'm not sureIt may help to go back and read "How do you take hormone therapy?" Birth control pills have side effects but are safe for most women for long-term use. But other hormones should be taken for only a few months or a couple of years.

You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.

Endometriosis: Should I Use Hormone Therapy?

Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.

Get the facts

Compare your options

What matters most to you?

Where are you leaning now?

What else do you need to make your decision?

1. Get the Facts

Your options

This decision aid is for women who have mild symptoms and
have not yet had
laparoscopic surgery to diagnose or treat
endometriosis. Hysterectomy and oophorectomy may be an option for women who have severe symptoms and have already tried hormone therapy and
laparoscopic surgery.

Key points to remember

There is no cure for endometriosis. But hormone therapy can
help relieve pain. Hormones work for up to 90 out of 100 women. This means that
they don't work for 10 out of 100 women.1

Hormone therapy is a good first choice for treatment, unless
you want to get pregnant soon. Hormones may reduce the number and size of
growths (implants) and keep them from spreading.

When your menstrual periods stop at around age 50 (menopause) and
your estrogen levels drop, endometriosis growth and symptoms will probably also
stop. (In some cases, scar tissue remains after menopause and can cause
problems.)

Several hormones may be used. You would start with birth
control hormones (such as a patch, pills, or a ring). They are usually the best
choice for long-term use until menopause. If they don't help your symptoms, you
could move to a stronger hormone. And if that one didn't help, you might try an
even stronger hormone. The stronger hormones are often used only for a short
time, because they have serious side effects.

If your doctor says it's okay, you can take
nonsteroidal anti-inflammatory drugs (NSAIDs) with or without hormone therapy to
help your pain. Be safe with medicines. Read and follow all instructions on the label.

For some women,
hormones reduce pain for only a short time. For others, relief lasts a long
time.

FAQs

What is endometriosis?

The
endometrium is the tissue that lines the uterus.
During each menstrual cycle, a new lining grows, getting ready for a possible
pregnancy. If you don't become pregnant during that cycle, the lining sheds.
This is your
menstrual period.

Endometriosis (say
"en-doh-mee-tree-OH-sus") is the growth of this tissue outside of the uterus,
usually on the
ovaries or the
fallopian tubes. It also may grow on the outside
surface of the uterus, the bowels, or other organs in the belly.

These growths are called "implants." They grow, bleed, and break down
with each menstrual cycle, just like the lining of the uterus does. In some
women, this can cause pain and can make it hard to get pregnant.

Sometimes scar tissue forms around implants. This also can cause pain and
trouble getting pregnant.

The female hormone
estrogen, released by the ovaries, makes the implants
grow.

How will endometriosis affect you?

While some
women never have symptoms, others have severe pain. In some cases, the problem
can affect how well your bowels, bladder, or other organs work.

Pain from implants may be mild for a few days before your menstrual
period. It may get better during your period. But if an implant grows in a
sensitive area such as the rectum, it can cause constant pain or pain during
sex, exercise, or bowel movements.

Symptoms often get better
during pregnancy and after childbirth and usually go away after menopause.

How do you take hormone therapy?

You likely will
start treatment with birth control hormones. They are usually the safest
hormones for long-term use. If they don't help your symptoms, you could take a
stronger hormone. And if that one doesn't work, you could try an even stronger
hormone. The stronger hormones are used only for a short time, because they
have serious side effects.

Hormone therapy reduces estrogen levels
in your body. Because of this, you can't use hormone therapy if you want to get
pregnant.

Birth control hormones (such as a patch, pills, or a ring) stop
ovulation and the growth of implants. These
hormones can be used long-term until menopause.

Gonadotropin-releasing hormone agonist (GnRH-a) therapy lowers estrogen to the levels women have after
menopause. It's usually used for only 3 to 6 months. Women sometimes take it with
progestin to reduce side effects. GnRH-a is given as a shot or as a nasal spray.

Progestin lowers estrogen. It shrinks
implants and reduces pain. Progestins are given as a shot or a pill. The levonorgestrel-releasing intrauterine device (LNG-IUD) is also used.

Danazol lowers estrogen levels and
raises male hormone (androgen) levels. It shrinks implants
and reduces pain for most women. Because of its side effects, though, it is not chosen as often as the other hormones. And it's used for no more than 6 to 9 months.

Aromatase inhibitors help stop the body from making estrogen.
These medicines are used along with hormone treatment.

How well does hormone therapy work?

Hormones
relieve the symptoms of endometriosis for up to 90 out of 100 women. This means
that they don't work for 10 out of 100 women.1 You may have to try two or more
types of hormones before you find one that works for you.

If
taking birth control hormones works for you, you can use them for years (unless
you plan to get pregnant).

For some women, hormones work for a
while. For others, relief lasts a long time.

About 35 out of 100 women who use hormones for
mild endometriosis have pain 5 years later. This means
that 65 out of 100 women don't have pain 5 years later.

About 75
out of 100 women who use hormone therapy for severe
endometriosis have pain 5 years later. This means that 25 out of 100 women
don't have pain 5 years later.

What are the risks of taking these medicines?

These medicines have different side effects and risks. Some of them can
make you feel like you're going through menopause.

Birth control hormones. Side effects are usually mild and often go away after
the first few months. They can include spotting between periods, nausea,
headaches, breast tenderness, and mood changes. There is a small increase in
the risk of getting blood clots. Your doctor will not prescribe these hormones
if you have had blood clots before, have had breast cancer, or are older than
35 and smoke.

Progestin. Side effects may include mood changes and
depression, bloating and weight gain, weight loss, breast tenderness, and
absent or light and irregular periods. High-dose progestin can cause bone
thinning. Talk to your doctor
about whether the
progestin intrauterine device (Mirena) might give you
the same benefits with fewer side effects.

Danazol. Side effects include
decreased breast size, acne, and more facial and body hair. It can also cause
deepening of the voice, which can be permanent. It can increase the risk of
"bad" cholesterol.

Aromatase inhibitors. They can
cause headaches, nausea, diarrhea, aching joints, and hot flashes. You also
have a risk of bone thinning if you use these medicines for a long time.

Why might your doctor recommend hormones to treat your symptoms?

Your doctor may advise you to try hormones if:

Your symptoms are mild.

You are
close to menopause. Hormones might ease your symptoms until menopause.

2. Compare your options

Take hormones

Don't take hormones

What is usually involved?

You take hormones as long as your
doctor suggests. Depending on the hormone, you may take pills, use a patch, use
a vaginal ring, use a nasal spray, or give yourself shots.

You may have tests to check for side effects, such as high
cholesterol, depending on which hormones you take.

You may take
nonsteroidal anti-inflammatory medicines (NSAIDs),
such as ibuprofen or naproxen, for pain.

You may take
NSAIDs, such as ibuprofen or naproxen, for
pain.

You may have
laparoscopic surgery instead, especially if you can't
take hormones or you have fertility problems because of endometriosis.

What are the benefits?

Your symptoms may get better or go
away.

You may be able to take hormones until menopause, when your
symptoms should go away.

You won't have side effects
from hormones.

You can start trying to get pregnant sooner.

What are the risks and side effects?

Hormones might not
relieve your pain, or the pain could return after you stop taking the
medicine.

Hormones have side effects that can include menopause
symptoms, rapid bone loss, and an increase in cholesterol.

You could have side effects from
NSAIDs used for pain.

Your symptoms
could continue or get worse.

If you have
laparoscopic surgery, you have the risk of infection,
bleeding, and damage to your bladder or bowels.

You could have side effects from
NSAIDs used for pain.

Personal stories

Personal stories about treating endometriosis with hormone therapy

These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.

"The pain before and during my periods was so bad, I couldn't exercise. I am an active person, and the pain was really getting me down. I have had endometriosis for years and have tried ibuprofen and other medicines I could get at the drugstore, but they were not helping anymore. My doctor said taking birth control pills might help me. She said that also taking ibuprofen around the time of my period could really help. After a couple of months, I noticed enough of an improvement that I could do everything I used to. I'm especially happy that I can use this treatment for a long time, unlike other hormone therapies like Lupron."

— Maria, age
45

"I first noticed that my periods were becoming painful about a year ago. I wasn't too concerned, but I discussed the pain with my doctor when I went for a Pap smear. My examination and Pap smear were fine. My doctor said that endometriosis could be the cause of my pain. Since my mom and an older sister have had endometriosis, I wasn't too surprised. My doctor talked to me about my options. She told me that using ibuprofen, such as Advil or Motrin, might help my pain. Now I start taking ibuprofen the day before my period begins. It really helps relieve my pain. As long as ibuprofen helps my pain, I will wait before I try other treatment for my endometriosis."

— Kathleen, age
38

"I was surprised when my doctor told me endometriosis could be the cause of the pain I was having with my periods. I had never heard of endometriosis before. He explained what it was and told me about the treatments I could try. Taking birth control pills didn't help, and my doctor said a medicine called Lupron might stop the pain, though I could only take it for a few months. Treatment with Lupron worked. I hardly have any pain now, and taking a little estrogen for add-back therapy controlled the hot flashes without feeding the endometriosis."

— Hannah, age 29

"My periods were really painful about 5 years ago. I went to my doctor, and he asked a lot of questions about my periods and did a pelvic examination and some tests. When all the tests came back normal, he said endometriosis might be the cause of my pain. I asked if waiting a few months to decide about treatment would be dangerous. He said waiting would be fine. After a few months, the pain eased up. I am glad I decided to wait and see."

— Nancy, age 40

3. What matters most to you?

Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.

Reasons to use hormone therapy

Reasons not to use hormone therapy

I want to control my pain better.

I get enough pain relief from anti-inflammatory medicines.

More important

Equally important

More important

I don't want to wait until menopause for my pain to go away.

I want to wait as long as I can before I start using hormones.

More important

Equally important

More important

I can handle the side effects of hormones for a few months.

I don't want to deal with the side effects of hormones even for a few months.

More important

Equally important

More important

I want to have a baby, but I'm willing to put off trying to get pregnant for 6 months or a year.

I want to get pregnant in the next year.

More important

Equally important

More important

My other important reasons:

My other important reasons:

More important

Equally important

More important

4. Where are you leaning now?

Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.

Using hormone therapy

NOT using hormone therapy

Leaning toward

Undecided

Leaning toward

5. What else do you need to make your decision?

Check the facts

1.
Hormone therapy is a good first choice to treat endometriosis if I don't plan to get pregnant soon.

True

False

I'm not sure

You're right. Hormone therapy is a good first choice for treatment, unless you want to get pregnant soon. Hormones may reduce the number and size of growths (implants) and keep them from spreading.

2.
Some hormones can cause side effects that will make me feel like I'm going through menopause.

True

False

I'm not sure

That's right. Some hormones just cause mild side effects. But some strong hormones can give you symptoms like those of menopause, such as hot flashes and vaginal dryness.

3.
I can take hormone therapy as long as I want to without side effects.

True

False

I'm not sure

You're right. Birth control pills have side effects but are safe for most women for long-term use until menopause. But other hormones should be taken for only a few months or a couple of years because of their side effects.

Decide what's next

1.
Do you understand the options available to you?

Yes

No

2.
Are you clear about which benefits and side effects matter most to you?

Yes

No

3.
Do you have enough support and advice from others to make a choice?

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